How do you share with spouse what you are going through?

My husband has been to all of my appointments since the beginning.  My vagina was completely closed.  He has been completely supportive and the doctor includes him in all of the process.  They can't really understand how miserable you are but they can sympathize and help you.

I find it difficult to talk about it as well to my husband - mainly because I get so upset and this then turns into a flare up. I ended getting him to read certain things and discussed the importance of him having an understanding. Why sometimes I can't do a workout, walk, swim, run and do what I would normally. Why I spend a small fortune on gyno visits, dermatologist and GP and compound pharmacy ointments, etc that really don't ever clear anything up. Why sometimes I'm so angry and sometimes so sad and why I can't have these extremes to my moods. What the outcomes are and why I keep doing the same thing in the hope that maybe it might turn it around one day.  

We have moved on to companion stage of our marriage and whilst this is difficult we still hug, kiss and love one another. I guess it's about finding a common ground that will work for you both. Good luck x

At first I was ashamed that my bits down there are different but when I had shoulder surgery and he had to put the ointment on he did not even know it was different lol! 

It does get better dealing with it. 

My main worry is if I cannot pee what will happen?

We have been married for 50 years and together two before that so we are friends first and foremost. 

Sex is important but it is not everything.

my husband is my best frind and my rock,it was him who insisted i went to my GP,he`s the one who checks daily for any differences and he is the one that doesn`t want to have sex in case i`m in pain,he is so so patient and insists he`ll wait for sex until i`m ready,i`m the one who feels guilty that he is waiting! he is so understanding its unreal.i have definitely got that one in a million.i find it odd that other husbands aren`t like him about LS,he did all the research and hugs me when i need it.he understands when i`m in pain and tries to help with anything to ease the pain.I am so lucky to have him

 

Hi judy, My hubby is kept fully in the picture. As I see it ,if I don't inform him fully then he can't support me fully. Don't be afraid, you deserve to have the support you need from him. LS is something that isn't likely to go away anytime soon. It's a new chapter in your relationship. Keep him aware of what you know and how you feel. Include him in your situation as LS is something that affects both of you in different ways. Don't keep anything a secret from him and hopefully he will have a better understanding of any suffering you may have which would help him to be as supportive as he is prepared to be. Sharing your whole experience with him will help you to feel less alone so don't forget a trouble shared is a trouble halved. 

First of all for anyone worrying about closing up so much that you cannot pee...this happened to me.  It all of a sudden got to the place where it would take me about 15 min. to empty my bladder because I would just drip.  I was totally fused.  They got me in right away to a urologist and got me opened up.  That was a few years ago and since I am so faithful with my CLOB cream, I have not had anymore problems urinating.  How bad is it though when the urologist didn't even know what Lichens Sclerosus was??? Now to the question about the husband knowing.  My gyne. made sure that my husband came to a few of my visits which was a good thing because she insured him that I had done nothing wrong to cause this.  You never know what might be going through your hubby's mind so at least he knew that this wasn't something that was my fault and was nothing that he could catch.  The bad thing was that I was fused so bad that my dr. had him "pull on my labia" every night to try to unfuse.  THIS WAS DEVASTATING TO ME.  Every time I look at him now I feel like a freak.  I know that he knows how I am no longer "normal looking" down there. Once I was referred to a Morgantown, WV doctor and then a dr. from Cleveland Clinic...both of these doctors did not think it was a good idea to "pull".  They thought that the cream should unfuse, not the pulling.

Judy, you are so right!  I live in the states and I'm not sure where you are, but my gyne. has really tried helping me although I can tell that she doesn't deal with this disease very often.  She at one time did say I was her worst case.  She has referred me to Morgantown, WV and then Cleveland Clinic in Ohio which is one of the best in the United States. Honestly, neither Morgantown or Cleveland Clinic changed very much from what my original gyne said other than "no pulling".  I am so very frustrated as I know you are...it's so hard to not just sit and cry all of the time.  I wish you the very best and hope things improve for you!

I showed my husband when I first noticed a problem and he came with me to my initial GP appointment and then to every subsequent specialist appointment. He supports me completely. But as things deteriorated I stopped showing him as I couldn't bear him to see how deformed I had become. So of course I became reticent about sex and we have now stopped that side of things completely even though I think I still physically could but mentally I can't cope with it. It IS sad because we were always really good together that way and I reckon we had a good few years left in us. But he still supports me completely and we still cuddle and as Deb stays still hug and kiss and love one another.